Life can be really brutal sometimes. Heart wrenching and unbearably difficult. It can feel like an insufferable heavy weight that is holding down any semblance of warmth, happiness or joy. It’s like the inner light has run its course and dims ever so slightly day after day until it feels like any moment it can distinguish entirely.
This January I willed that light to stay – if only to manifest through the light of their fourth and sixth birthday candles.
My dad was sick. He was diagnosed with stage four small cell lung cancer February 2022. We were all there. My dad, mom, brother, sister and me – the original foundational five gathered in my parent’s living room. The living room normally cozy and warm, felt cool and dark. Its own fabrics seemed to lose its color – coming across abnormally dark and dull, while every emotion crisp and clear.
Without a word, I immediately felt off center. My dad was sitting in the corner of the couch covered by a warm wool blanket. On the surface, a very normal description for a person in a living room, but for my dad it was strikingly off. He was famous for his chair. Forever it was known as “dad’s chair,” and eventually “Papa’s chair.” It was an unspoken rule – or perhaps more accurately, spoken only once. The physical chair changed, but its owner – never.
So, seeing my dad situated anywhere else was unsettling. And then we all heard it. Those three words that would change our lives forever — dad has cancer.
For two years he willed his health into reality. He stayed active as could be – competitive softball, bocce ball and bowling. He ate perfectly healthy. Stayed optimistic. Doubled down on his witty humor, and kind, yet firm advice and counsel. He followed every direction his doctor and nurses gave him and underwent ever procedure that existed. There was radiation, chemotherapy, immunotherapy; there was oxygen and a gamma knife procedure, brain and body scans, and three distinctly unnerving early phase clinical trials. There were thousands of blood draws, hundreds of hours at the hospital, dozens of infusions and an equal number of bruises from all of those needles. There were layers of emotions, complicated conversations and a long journey toward acceptance of the many different iterations of the new normal.
Two opposing realities became real – a diagnosis that had a singular conclusion, yet a life that dared it to come true. There was absolute respect for its ever presence, but a singularly focused resolve to never let it overwhelm or consume his space.
Two opposing realities became real – a diagnosis that had a singular conclusion, yet a life that dared it to come true. There was absolute respect for its ever presence, but a singularly focused resolve to never let it overwhelm or consume his space.
My dad was always focused on whatever was next. He didn’t dwell on how excruciatingly difficult it was for him. He didn’t complain about the unending nights he lay awake in pain, coughing fits that left him gasping for breath and pierced with the excruciating truth that lay within. He someone found humor in the hundreds of needles that bruised his tough, leather skin hardened by years of labor and thickened from an intense childhood. He refused to settle into a life that was focused on what was going wrong, but instead he was motivated by what could be and what was. He showed my mom yet another angle to their 50 yearlong deep love and devotion by meticulously checking off every life to-do he could control. He never stopped showing up for my brother, sister and me; not once letting down his grandchildren nor gave up picking up the phone to connect with his decade’s long friendships.
My dad was a perfect patient. He did everything he was directed to do and remained optimistic. He formed real connections with nearly everyone he encountered in the hospital. And he had a list. A beautiful representation of who and how he valued the nurses, technicians, doctors and staff he knew could make a disproportionate impact on his health. And if you made the list – now that was something special. If you made the list, my dad expected you to be excellent. He called on you. He wanted you and only you because you did your job to perfection. You didn’t brag or talk on about how good you were – you just did what you were there to do. You did it right and you did it without fanfare or praise. You showed up; you performed; you followed through, and you did it again, consistently. And the more consistent you were, the higher on the list you rose. He earned that right to choose. He held elite status in a club he never wanted to be part but slowly and with calculation, figured out how to navigate its membership.
He held elite status in a club he never wanted to be part but slowly and with calculation, figured out how to navigate its membership.
For two years that list evolved, becoming excruciatingly important during the most difficult days.
For two years my dad’s cancer felt like an unwelcome guest we were all obligated to invite to come along every single time we were together. Most of the time it was quiet, polite even, in that it didn’t interrupt and oftentimes, was so discreet that you could forget it was there. Even still, it’s very presence disrupted the energy. It was subtle, but ever present. It created an unnerving feeling that we were all on borrowed time. It put extra weight on getting the picture –documenting every moment because we never knew which time would be the last. We never talked about it, but for me it was all consuming. Nothing ever felt forced, but it did feel profoundly important. The moment mattered. The picture mattered. The images mattered. He never said it, but I know he felt the same. He was even more intentional with the time he spent with everyone, especially the kids. All of us, but each of them in particular feeling Papa’s special love for them and then pausing quick to document it too.
My dad was always moving forward and planning for what was next, but he was realistic. My dad was practical. He knew his universe of what could be was getting a bit smaller and I know that was frustrating for him. Frustrating because he wasn’t the one to choose this path; it was cruelly chosen for him. For a man who was painstakingly deliberate with every decision, it was a painful paradox for any of us to accept.
Instead of my parents planning for their retirement adventures together, free from the routines of career and constraints of COVID, they were now held captive to recurring treatment calendars. While they never dwelled on it, my heart ached for them. It just wasn’t fair. In my own small way, I tried to right the universe’s wrong.
That summer we invited my parents to stay with us in a cabin way too big for our family, and with an earned sprinkle of luxury. We picked the rooms, planned the getaway and schemed the hiking routes. But then reality hit. We agreed that hiking all day and staying in a remote cabin hours from a hospital wasn’t the most sensible decision. And then it happened again. Later that year we invited my parents to meet us at the beach house we rented, to relax from our first trip to see Micki and Minnie. This time it wasn’t the location, it was the timing. They would have been greeted by the overwhelming grander of the crashing ocean waves in our borrowed backyard, just as the inevitable and excruciating treatment side effects would have hit my dad. Sadly, and unfortunately again, the decision was no.
They would have been greeted by the overwhelming grander of the crashing ocean waves in our borrowed backyard, just as the inevitable and excruciating treatment side effects would have hit.
Every occasion that first year, and second too, just felt a bit heavier. Birthdays, anniversaries, milestones, outings, holidays, and even trips that could have been – it was impossible not to question if any would be the last. The research was clear. The statistics and timeframes, it was all excruciatingly clear. So too were the outliers. Nearly every data set has outliers, and for stage four small cell lung cancer there was no exception. My dad – his energy, optimism, aura – it all felt like he could be that outlier; the asterisk that can be impossible to explain. He looked good. People told him that all the time. We told him that often too. But I learned later that he hated it; the sentiments could strike him off balance, wanting instead to be seen – really seen. Never for pity or to dwell, but for deep acknowledgement and understanding of the layers underneath. He may have appeared good on the outside, but there was nothing good about what was painstakingly eating away at him. That hit deep. It’s tough to reconcile all the emotions he must have been navigating, let alone all of us. But the more time passed after first learning of the diagnosis, the more we felt like he really could fulfill the power of the asterisk – the outlier who dared the rest of the data to be true.
The more time passed after first learning of the diagnosis, the more we felt like he really could fulfill the power of the asterisk – the outlier who dared the rest of the data to be true.
It was astounding how often my dad was dealt a blow and so soon after, be given hope again with a new clinical trial or procedure. At times it felt like the treatment options were plentiful – and despite the minuscule percent of patients enrolled, the trials were offered in our own backyard. It was astounding. It was easy to forget how lucky we were, but we tried never to stop acknowledging how blessed and grateful we were to be surrounded by such world class hospitals. It felt like the stars had aligned. My dad’s doctor, team of nurses and researchers, even cancer research funding. There were so many sources of concentrated, powerful energy all pointing directly at my dad – engulfing him with the absolute best science and humanity could offer.
There were so many sources of concentrated, powerful energy all pointing directly at my dad – engulfing him with the absolute best science and humanity could offer.
We were all feeling so hopeful as talks of Thanksgiving and Christmas was starting the second year into this long winding trek we were all on together. It was a big year, as it was the first year ever that my parents wouldn’t be hosting Thanksgiving. We all agreed we had to pivot. It was clear it was becoming too much, and the time was right to evolve traditions. We volunteered to host Thanksgiving at our house. We’ve hosted dozens of parties, but I felt like this particular occasion had to be even more special, even more perfect. The framework was created, and I must say, it turned out near perfect. Perfectly roasted turkey, exquisite sides, flowing cocktails, mild temperatures, a bon fire and a captivating poker game no one wanted to end. My dad especially really enjoyed himself. He happily passed the carving baton to my husband and seemed to truly allow himself to be present. The energy felt balanced. Everything felt right, except when it didn’t. There were brief moments when the cancer interrupted the energy, so self-absorbed that it had to remind us all it was still there. That unwelcome guest we were all obligated to invite.
There were brief moments when the cancer interrupted the energy, so self-absorbed that it had to remind us all it was still there. That unwelcome guest we were all obligated to invite.
This time it showed up through brief coughing fits. My dad tried to hold it back, but it was impossible. It pierced through whenever it wanted, and with whatever force it preferred.
Over the next weeks leading up to Christmas, it seemed to come on stronger and with more frequency. Never one to dwell on the negative, my dad didn’t want to talk about it often, but it was impossible to ignore. It became strikingly clear Christmas Eve at my brother’s. The occasion was wonderful. Another family holiday with beautiful food, drinks and atmosphere. What felt off was where my dad sat. Only able to sit long enough at the table to enjoy his meal, he moved to the corner of the couch and stayed there for an uncomfortable amount of time. Perhaps not odd on its surface, but for someone always among and within the conversation, there was an imbalance to where he was physically contrasted to everyone else. Eventually we all migrated to him, and while we were all together opening gifts and sharing laughs, the universe felt balanced again despite the cancer aggressively interrupting — forcing my dad in to coughing fits in and among the joy so as not to let us forget its haunting ever presence.
The next day we had my parents to our house after a full morning of unwrapping all of the treasures Santa left our 4, 6, 8 and 10 year olds. It was a magical morning, extended into the evening when my mom and dad arrived for dinner. While just our immediate family this time, it was just as special as the boys radiated with Christmas magic, smells of Christmas dinner permeated the house, and the anticipation of another gift exchange after dinner was central. On Christmas our boys express their spirt of giving with gifts for my husband and me, along with my parents, their Grammy and Papa. It’s always so special unwrapping the kid-selected gifts from the school’s Santa shop, and this year was no different. There were bath bombs and mugs, an emoji pillow and jewelry, a one-of-a-kind gold-plated motorcycle clock and even an ode to dishwashing. There were tears of laughter, hugs and kisses, videos and pictures. It was perfectly perfect. Perfect moments tied together to create a memory none of us could have known will never happen again.
Just days later, December 30, 2023 to be exact, my parents were at the hospital for a scheduled appointment for my dad. He was there for a routine blood transfusion in preparation for his latest clinical trial treatment. I knew he was there but didn’t give it much thought because unfortunately, adding the word “routine” to blood transfusions had become normal for our family. I still wasn’t concerned when my mom called to tell me he was being admitted to the ER for a spiked fever and the transfusion couldn’t proceed until my dad’s temperature was stable. I made myself another mimosa, feeling no guilt slip in as I was sipping back far too many bubbles early that morning with friends at our house. I knew he’d be ok; he always was which is why concern didn’t permeate either when I found out later the same day that my dad was being moved from the ER and admitted to the hospital for observation as directed by his oncologist. At that point I was used to my dad needing to stay in the hospital for longer than typical timeframes because of the various clinical trial protocols he had to adhere to during treatment. Despite the familiarity of my dad being in a hospital room on any given day, I did start to feel guilty that I wasn’t there at least to visit. I felt like I should be there, if only to roll our collective eyes at the ridiculousness of the situation. So, after lots of water and a couple aspirin, I packed up leftovers from our brunch to share and headed for a quick trip to the hospital.
Everything was relatively normal. The room was stark – nothing fancy and seemingly high-tech like we’re used to seeing on treatment days, but normal, I suppose. My dad was tired but awake. My mom was exhausted but doting. He ate just a bit and wanted my mom to do too. In between a few coughing fits, we did indeed roll our eyes at the ridiculousness of what happened but were all very aware and grateful for the meticulous attention to his care. I stayed a couple hours and headed out in time to put the boys to bed and start to prep for our own little fondue-centered New Year’s Eve party complete with decorations, bubbles and booze. I fully anticipated my parents to stop by the next day too.
Nothing could have prepared me for what came next. A New Year’s Eve nightmare unfolding in real time. Hats, blow horns and sparkling grape juice at the nurses’ stations across from an ICU room now occupied by my dad.
A New Year’s Eve nightmare unfolding in real time. Hats, blow horns and sparkling grape juice at the nurses’ stations across from an ICU room now occupied by my dad.